Blood Cancers & Disorders Support Group

Public Support Group

Follow for updates

Search discussions

Start a new discussion

474 total results

Comment

Everyone is different but I went to Rochester MN, Mayo Clinic and after 2 years of...

https://connect.mayoclinic.org/comment/913817/

Discussion: Male 65 year old farmer with thrombocythemia

Support Group: Blood Cancers & Disorders

Posted: Aug 16, 2023

Comment

I’ve also failed other medications including Anagleride and Interferon (awful drugs!). Hydroxy made me violently ill....

https://connect.mayoclinic.org/comment/908367/

Discussion: Has anyone had experience with Jakafi?

Support Group: Blood Cancers & Disorders

Posted: Aug 6, 2023

Comment

@drbart86 hi, I was diagnosed with two mutations in the bone marrow Jak2 and Calr, apparently...

https://connect.mayoclinic.org/comment/1483684/

Discussion: Is anyone involved in clinical trials for ET, specifically for CALR?

Support Group: Blood Cancers & Disorders

Posted: Jan 16 9:13am

Comment

Good information! I think I’m sliding down with HU and worried about waiting for a recheck....

https://connect.mayoclinic.org/comment/1350617/

Discussion: Will my Hydroxyurea dose ever be reduced? Does this happen with ET?

Support Group: Blood Cancers & Disorders

Posted: Jul 17, 2025

Comment

Hi I am taking hydrea 500 mg twice a day and once on alternative days...I have...

https://connect.mayoclinic.org/comment/1279482/

Discussion: New to Hydrea for ET

Support Group: Blood Cancers & Disorders

Posted: Apr 11, 2025

Comment

The same happened to me but ok for now on jakifi.I am 75 and hate to...

https://connect.mayoclinic.org/comment/1244972/

Discussion: New to Hydrea for ET

Support Group: Blood Cancers & Disorders

Posted: Feb 24, 2025

Comment

I just failed hydrox and suspecting Jacafi to be offered at my next appointment...Keep us posted...

https://connect.mayoclinic.org/comment/1065373/

Discussion: How bad is a diagnosis of Polycythemia Vera? What to expect?

Support Group: Blood Cancers & Disorders

Posted: May 10, 2024

Comment

Yes, daily dosage. Only 1/2 phlebotomy since 2021. Platelets always good, but considering jakifi because of...

https://connect.mayoclinic.org/comment/833975/

Discussion: Hydroxyurea side effects lessen over time?

Support Group: Blood Cancers & Disorders

Posted: Mar 29, 2023

Comment

Yes, 1000 is daily dosage. When I was first diagnosed in 2021, my hematocrit was 57....

https://connect.mayoclinic.org/comment/833883/

Discussion: Hydroxyurea side effects lessen over time?

Support Group: Blood Cancers & Disorders

Posted: Mar 29, 2023

Comment

I was diagnosed June 2025 MPL mutation with SRSF2 mutation. I’m on a clinical trial for...

https://connect.mayoclinic.org/comment/1501715/

Discussion: Anyone have Myelofibrosis (CMS-HCC)?

Support Group: Blood Cancers & Disorders

Posted: Feb 9 11:56am

1
…
42
43
44
45